High Dose Myeloablative Chemotherapy & Bone Marrow Transplant

August 2012 thru September 2012

More Warnings

On August 14, my family, including Jolynn, Ando, my parents, and my brother, met with Dr. Matsui to review the bone marrow stem cell transplant and its potential side effects.

For me, much of it repeated what Dr. Schweizer had already explained the week before.

Liver failure equals death.
Severe graft-versus-host disease equals death.
Many different complications could equal death.

Aside from death, there were risks of serious damage to organs, including possible blindness.

All of it was real.

I understood that doctors must clearly explain every possible risk before a patient agrees to proceed.

Even with modern medical technology, nothing is guaranteed.

I had already accepted that I could die from this.

There were other options besides transplant, but none of them looked good to me. I did not want to go back to repeated rounds of chemotherapy until it either stopped working or killed me.

I was not going to give up and wait to die without trying.

So I signed the paperwork acknowledging the risks, including death.

During that meeting, I also learned more about my AML. Dr. Matsui described it as a “bad” AML. By that he meant it was more difficult to treat than the “good” types.

Okay.

If it was bad, then I would fight it anyway.

100% Match

Dr. Matsui mentioned that my donor’s blood type was A+.

I quickly said that I was O+ and thought my matched unrelated donor was supposed to be a 100% match.

He explained that blood type does not matter in this case. What truly matters is the human leukocyte antigen, or HLA. The HLA markers must match very closely for the transplant to work properly.

He also told us that my blood type would eventually change to A+ after the transplant, likely within about six months.

That amazed me.

It was incredible to think that something as basic as blood type could change.

High Dose Poisons

I was re-admitted to the hospital on August 15.

A nurse gave me two options for Busulfan, the conditioning chemotherapy drug: take it orally or receive it intravenously for the next four days.

Up to that point, I had been joking that the IV pumps were my girlfriend. I called her Miss Ivy.

Since Dr. Matsui mentioned I could take Busulfan by mouth and avoid being attached to IV pumps all day, I told my family that I was breaking up with Miss Ivy.

Nice advice, I thought.

I chose the oral option.

What I did not realize was how large those capsules were.

For each dose, I had to swallow five extra-large capsules. Inside those capsules were a total of 34 chemo tablets. I took 16 doses over four days.

That meant 80 capsules and 544 chemo tablets.

frown

I struggled for five to fifteen minutes each time, swallowing one capsule at a time. I ate crackers and drank a lot of water just to keep my throat open.

By the end of the first day, I would have gladly taken Miss Ivy back.

Lesson learned.

I asked a pharmacist about it. She told me these were the largest pills used in this treatment.

Good thing I would not have to take them again.

On August 19, I switched to another chemotherapy drug, Cytoxan, given intravenously once a day for two days.

Along with Busulfan and Cytoxan, I also took several other medications, including Dilantin to prevent seizures, Zofran and Ativan for nausea, Mesna to protect my bladder, and Dexamethasone.

I lost count of how many pills I was taking.

Busulfan slows or stops the growth of fast-growing cells, including cancer cells and bone marrow cells. In my case, it was used to destroy my existing bone marrow to make room for the donor’s stem cells.

While on high-dose Busulfan, I took anti-nausea medications and Dilantin to prevent seizures. Busulfan also causes hair loss and darkening of the skin.

Note to self: I am fighting for my life. I am not here to look good anyway.

Cytoxan also kills fast-growing cells, including cancer cells, bone marrow cells, hair cells, and mouth cells. Because it can irritate the bladder, I took Mesna and received plenty of IV fluids to protect it.

I drank constantly to keep everything flushed out.

Old Vaccines and Immunes No More

At this point, there was no going back.

My previous vaccines and immunities were gone. My immune system had been wiped out.

I was starting over, like a newborn.

For at least a year, I would need to take preventive medications before I could begin receiving certain vaccines again. Some vaccines I would never receive again.

I had to be careful.

No returning to work anytime soon. No eating at restaurants. No crowded places. Avoid anyone who was sick, including family members.

One of the lead team doctors seemed baffled that I kept talking about going back to work. He suggested that I should consider retirement and simply enjoy life instead.

I was not thinking that way at all.

If I got sick, it would be far worse than before.

I also had to avoid certain hobbies, such as woodworking, because of dust exposure. Mold and mildew were serious concerns.

My immune system needed time to rebuild.

My 45th Birthday

On August 21, my family came to celebrate my 45th birthday.

Several nurses and doctors stopped by and assumed we were celebrating the transplant as a “new birthday.” I learned that many transplant patients consider their transplant day as a second birthday.

I explained that this was actually my real birthday.

Many of them were surprised.

“Wow, you will have two birthdays in one day,” they said.

I ate my favorite birthday dinner: fried chicken, corn on the cob, mashed potatoes, and Cherry Delight for dessert.

Yummy.

Nope, I do not like cake.

Transplant Delayed

Because my donor was a matched unrelated donor, the stem cells had to be transported to Johns Hopkins. I did not know where they were coming from or who the donor was.

The timing depended entirely on when the cells arrived and cleared laboratory processing.

So we waited.

Later, I learned that the bag of donor stem cells was on a flight and expected to arrive at Baltimore Washington International Airport around 8:00 p.m.

I figured it would not reach me until after midnight since it had to go through final testing before infusion.

It finally arrived at 1:00 a.m. on August 22.

According to the nurses and doctors, I would now have two birthdays next year, August 21 and August 22.

Hint: Please ask me for a very long birthday wish list next summer, okay?

Transplant

The nurse connected the bag of donor stem cells directly to my Hickman catheter. It was done the old-fashioned way. They did not use an IV pump because the pump could damage the stem cells. They wanted every drop to flow in safely.

I have to admit something rare for me.

I was scared.

This was unpredictable. There were no guarantees that I would come through it without severe complications. I was not finished with many things in life, especially with my family.

If it did not work, it could kill me. Liver failure was one possibility. There would be no emergency surgery to fix anything. If something went wrong, there was no easy solution.

I tried my best to stay positive and believe I would make it through.

For those who thought I went through surgery for the transplant, there was no surgery. The stem cells were simply infused into my bloodstream through the Hickman catheter. The donor’s stem cells would find their way into my bone marrow on their own.

Reactions

I watched the donor’s stem cells flow into my body through the Hickman catheter.

Almost immediately, I felt something.

Heat.

It started at the top of my head and moved down toward the middle of my back.

I asked the nurse if I was supposed to feel something that quickly. She looked puzzled and asked me to describe it. As I spoke, the heat intensified.

She clamped the tubing to slow the infusion and rushed out to get medications.

While waiting, the heat suddenly turned into chills.

Within minutes, she returned and gave me morphine and other medications. My whole body began trembling uncontrollably. I could not stop it.

My temperature climbed to 101 degrees and continued rising.

“No matter what, the transplant must continue,” the nurse told me. “We can slow it down, but we cannot stop it.”

I agreed. There was no point in arguing.

Jolynn sat beside me on the bed and tried to help steady me. That meant a lot.

The infusion was supposed to take about an hour. It lasted four.

Even with anti-nausea medication, I vomited as the last drops entered my body.

I thought it was finally over.

Nope.

The nurse added saline to the bag, shook it to rinse out any remaining stem cells, and continued the infusion so I would receive every last drop.

groan

I vomited again.

When I went to the bathroom, I noticed blood in my urine. I panicked, but the nurse reassured me that it was expected.

It was a very rough early morning on August 22.

After battling through all of it, I passed out.

Recovered Quickly

By late morning on August 22, I was already awake and feeling relatively stable.

“Phew,” I told myself.

The transplant itself was over.

Hopefully I would never have to do that again.

The team doctors came in to check on me. One of them said he was surprised that I had experienced so many reactions at once.

I asked them something that had been on my mind. When the donor stem cells began producing blood cells in the coming days or weeks, would I experience those same reactions again?

They told me no. It would be completely different.

I nodded, unsure what else to ask.

That day became Day One.

Now, I had to wait.

Waiting Game

For the next two days, I did not receive any chemotherapy. It felt strange.

It was simply a waiting game.

On Day 3 after the transplant, I received additional doses of Cytoxan for two days to help prevent graft-versus-host disease.

So far, everything seemed manageable.

I was smiling again. I had made it through three cycles of chemotherapy and the transplant infusion itself.

While waiting for my blood counts to drop, I walked several miles a day around the unit.

This time, I was fully prepared for a long hospital stay.

I had packed enough to keep myself busy.

Blood Counts Dropped

As expected, my blood counts began to fall.

Within days, my white blood cell count dropped to zero.

I required blood and platelet transfusions again.

Based on daily CBC results, I received platelet transfusions if my count fell to 5,000 or below. I received blood transfusions if my hematocrit dropped to 25 percent or lower.

For reference, normal platelet counts range from 150,000 to 350,000. Normal hematocrit ranges from 41 to 53 percent.

A million thanks to blood donors.

I would not have made it this far without them.

Smooth Sailing... Not

Everything seemed to be going smoothly.

Until it was not.

I developed an infection.

From that point on, it became very difficult. Even though I had prepared for a long hospital stay, I was not prepared for how sick I would feel.

I went quiet.

I stopped answering emails. I did not have the energy to do much of anything.

My days became simple: sleep, eat, use the bathroom, shower, and talk briefly with my family.

Normally, your white blood cells keep the germs inside your body under control. Without white cells, even your own bacteria can become dangerous.

That is how I became infected.

It could have been much worse if not for the medications I was already taking.

Taste Buds and Hair Loss

Food and drinks began to taste different.

Worse than during the previous chemotherapy cycles.

I struggled to eat, but I knew I had to keep something in my system to stay strong.

When I told the team doctors about the bad taste, they suggested I eat more hospital food and less of my favorite home-cooked meals. Their reasoning was simple: do not associate the taste of good home cooking with feeling sick.

Cherish those flavors for later, after recovery.

It made sense.

Still, my family brought meals from home. They tasted much better than hospital food.

Many thanks to Jolynn and my mom for making the effort. I probably would have stopped eating entirely without them.

This time I lost even more hair, not just on my head but across my whole body.

The conditioning chemotherapy was clearly stronger than the first two treatments.

I finally understood why the hospital offered free haircuts and shaving for patients.

Loose hair was everywhere. It covered my pillow, my bed, the floor, and even floated around the room. I felt bad for the cleaners who had to chase it down each day.

I promised myself that if there were ever a next time, I would shave it off early and spare them the mess.

Yea haw.

At least I did not have to shave my face for a while.

Infections

Each day, I seemed to get sicker.

They performed skin biopsies to determine the type of infection so they could choose the correct antibiotics. While searching for the right medication, I developed allergic reactions to some of them.

Fever. Rashes. Hives.

It felt like every few days there was a new problem.

I would wake up each morning wondering what would happen next.

There were so many medication changes that I lost track of what I was receiving.

Some of the antibiotics caused my blood counts to drop even further. My platelet count fell as low as 3,000 despite frequent transfusions.

After platelet transfusions, I sometimes developed small rash spots on my chest or scalp. To prevent that, I took Tylenol and Benadryl before each transfusion.

That helped.

I never had problems with blood transfusions, so I did not need pre-medication for those.

Bleeding

My platelet counts dropped so low that I began to bleed.

Without enough platelets to form clots, small red-brown spots appeared on my hands and feet.

Then my nose started bleeding.

We could not stop it easily. It lasted more than seven hours.

The team packed my nose and instructed me not to touch it for several days. I received multiple units of platelets and was given Amicar to help control the bleeding.

With platelet counts that low, even minor bumps or cuts could become serious.

My activity became limited to sleeping, eating, showering, and short walks to the bathroom.

I managed only half a mile to a mile of walking per day.

Bye-Bye Hickman Catheter

Methicillin-resistant Staphylococcus aureus, MRSA, showed up in my blood cultures.

The team explained that if MRSA attaches to biofilms on medical devices, it becomes very difficult to eliminate, even with strong antibiotics.

Because of that, my Hickman catheter had to be removed.

They also told me that if I had any artificial joints, those might have needed removal as well.

Even with very low platelet counts, they had to take it out.

On August 31, the doctor came in to remove it. He gently tried pulling first and asked if I wanted a numbing injection.

“No,” I said. “Just pull it out quickly.”

He did.

Pop.

It startled my interpreter.

It did not hurt.

Still, I felt disappointed. I had that Hickman catheter since May 15. It had been convenient and mostly pain free.

18 Gauge and 20 Gauge Needles

Without the Hickman catheter, IV fluids had to be given through peripheral IV lines.

They placed an 18-gauge needle in my left arm and a 20-gauge needle in my right arm. The larger needle was used for heavier fluids such as blood transfusions.

I quickly learned that magnesium and potassium burn when infused through arm veins.

One time, I received a bag of potassium and felt intense burning in my arm.

Ow.

I had to call the nurse to stop it. After that, I took potassium orally instead.

It was the second largest pill I had ever taken, right behind Busulfan.

Hard to swallow, but better than feeling that burn in my arm.

I dealt with those two needles for the next five days.

Hello Central Line Catheter

Once my blood cultures came back negative for MRSA, it was time to place another central line.

On September 5, two PICC technicians came into my room to insert a peripherally inserted central catheter, known as a PICC line.

They laid out sterile supplies on a tray and prepared everything, including a numbing injection.

One of them asked if I was ready.

“Yes,” I said. “Go ahead.”

She punctured a vein in my arm and began threading the catheter upward while the other technician watched an ultrasound screen to make sure the line was advancing properly toward my heart.

When they finished and started cleaning up, they realized something.

I had never received the numbing injection.

The technician immediately apologized.

I told her I did not feel any pain.

Instead of being placed in my chest like the Hickman, this line went through my left arm.

It was not as comfortable as the Hickman catheter, but it was much better than relying on peripheral IV needles.

Definitely better than the needles.

Not Easy

Earlier, I had told myself that induction and consolidation chemotherapy were manageable and that the third round would not be too bad.

I was wrong.

This phase was nasty. Far worse than the previous two.

I could not keep up with walking or most of my usual activities. Even eating became a struggle.

I slept a lot.

I barely touched the things I had brought to keep myself busy.

Most days, I slept, visited briefly with family and friends, and tried to conserve whatever energy I had.

That was it.

Kidding Around

Even while I was that sick, I stayed positive and teased the nurses and doctors whenever I could.

One doctor who performed my skin biopsies seemed a little shaky. I teased him about being nervous, which only made him tremble more as he tried to perform the punch biopsies and stitch them up.

It was funny to me.

Another doctor decided it was safe for me to take Vancomycin orally to treat MRSA in my gut. She explained that oral Vancomycin stays in the gut and does not enter the bloodstream, so it would not cause the rashes I had experienced with IV Vancomycin.

I was skeptical, but I took it.

The next morning, I checked carefully. No rash.

So when she came in for morning rounds, I covered myself with blankets and told her I had developed severe rashes overnight.

She quickly pulled back the blankets, checked my legs, my stomach, even pulled off my socks.

“Lost something?” I asked.

She gave me a look.

I told her I was just making her morning more interesting before she had to deal with sicker and more depressed patients.

She admitted it did make her morning better.

Later, the same doctor removed my sutures from the biopsies. She said she was very good at it.

I asked her how old she was when she learned to tie her shoes.

“Four or five, I think,” she said.

“Four or five? That’s too late!” I replied.

She assured me I would not feel anything when she removed the sutures. On the second one, I screamed.

She froze completely.

“I’m kidding,” I said after a pause.

She relaxed and finished removing the rest.

I have a high tolerance for pain. I was confident enough to tease them while they worked on me.

It helped pass the time.

Hospital life can get very boring.

Baseline

One thing that helped me was the baseline I started with.

Before all of this, aside from the blood cancer, I was in very good physical condition.

Because of that baseline, I believe I was able to endure what I went through, even after losing more than 25 pounds and a significant amount of muscle.

The doctors said the same thing.

I saw other patients with leukemia who were in much worse physical shape, and I felt for them.

No matter what, regular exercise matters.

Once the PICC line was removed and I recovered, I planned to rebuild myself.

Inpatient-Outpatient

On September 12, I was discharged.

I was still sick and slept most of the day, but my blood counts had reached the minimum level required for discharge. The team felt comfortable enough to send me home.

Maybe I had teased them too much.

I transitioned from inpatient to inpatient-outpatient, often called IPOP. I returned to Johns Hopkins daily for CBC tests, IV fluids, medications, and physical checkups.

At home, I slept 16 to 20 hours a day.

I did very little else.

I walked when I could, but not nearly as much as before.

About a week after discharge, I noticed rashes on my forearms and hands. The doctors said it could be graft-versus-host disease and wanted to monitor it closely.

They performed another skin biopsy to confirm whether the rash was GVHD or a reaction to medication.

A few days later, it was confirmed as GVHD.

They explained that in some ways it was a positive sign. The donor’s immune cells were active and working. Unfortunately, they were attacking my healthy cells as well.

The rash was manageable, though uncomfortable. My skin became extremely dry and peeled like a bad sunburn.

Gold Bond lotion became one of my best friends.